One of the up sides of having ADD is my capacity to scan for and process lots of information. When I drive I tend to have my eye two or three steps ahead of my car. The down side of course is that I can be an impatient driver and riding with me can be pretty annoying. The best way I've found to slow down my mind is to stop and regularly meditate - but that's not easy when I'm buzzing past huge rigs at 75 MPH.
For nine days in mid-October Tad and I drove nearly 2000 miles to visit family and friends, to take in the beauty of the autumnal desert and to simply get away for a much needed vacation in Southern California and Arizona. The hidden goal that gave birth to the trip however was for him to say good-bye to members of his family of origin for perhaps the last time.
If all goes well the next few months will present Tad with a bone-marrow transplant (more realistically called a stem cell transplant) which may or may not rid him of cancer and may also kill him by replacing his immune system with someone else's. It's the most promising procedure for a long-term cure and the most fatal due to the many possible complications; the ultimate eye of the needle.
As we put more and more miles between us and the Bay Area I watched Tad and myself loosen up, laugh more, become curious about things around us. I watched us release the cumulative fears and obsessions we'd been building up around this phase of his treatment. I observed us as we temporarily let fade from our awareness the crazy-making fact that the ONE hospital offering the most promising clinical trial doesn't like Tad's insurance - or to be more specific doesn't like Tad's secondary insurance - the part that covers the 20% his other insurance doesn't cover.
Unlike many of my friends Tad is not without insurance; he actually has three different kinds of coverage! But after telling us they simply needed to speak to the insurer, the folks from the Seattle Cancer Center have now announced that they do not bill that insurer, or rather that they once did but they had bad luck so they'd rather not for the moment - the perfect response to make any level-headed person go bonkers.
In my attempt to make this road trip as relaxing as possible I decided to resist the insistent pull of my mind toward what was happening 300 yards ahead of our car and devised strategies on how I might possibly get around it. I decided to stop wondering why the person driving the light blue Chevrolet with Nevada license plates thinks it's okay to set up residency in the left lane and drive ten miles under the speed limit, keeping gentle pace with an 18 wheeler full of chickens. I know that if I focus on these things long enough my mind gets jittery, I feel some kind of mis-placed rage and I ultimately stop enjoying the beauty of the landscape, the music from the Ipod and the pleasure of driving in the open desert with my beloved.
The strategy I used for myself was taking a deep breath and simply repeating in my mind: "Just this". Not the baby blue chevy, not the 18-wheeler, not the question of whether we will get through LA before the bewitching rush hour deadline of 2:30 PM but...
just this...
just this....
just this.
It reminded me of a time when I was attending a silent retreat in Northern Quebec with American Indians. I actually fasted for ten days, and remained silent for four of those ten days while participating in various native American rituals. One day I took off for a long hike in silence and discovered a gurgling mountain river. I walked along side it and became so fascinated by it that I lost the path home through the thick woods. But I knew that if I just followed the river downstream it would take me back to a road that would take me back to my camp. Standing on one of the giant boulders looking downstream my heart dropped since I could see no possible road map. Much to my chagrin the rocks were not scattered in a terribly organized fashion! Yet I had no choice.
What I discovered was that all I had to do was focus on getting to the next rock and once I got to there, the next one seemed obvious. One rock at a time I made way back home. That rock-jumping experience was one of the big take-aways from my tree-huggers, touchy-feely retreat: take life one stone at a time and don't get too obsessed about the big picture.
Just this.
I don't know what the outcome of our present medico-insurance dilemma will be. I don't know if we'll get into the study in Seattle (we have an appointment on Friday to discuss it) or if we'll remain in San Francisco and get the less promising (but less fatal) autologous transplant in which the doctors will give Tad some of his own previously extracted immune stem cells.
When people or greeting cards tell me to "simply trust" - I admit that my first thought is "trust what?" or rather "Trust WHAT!?!?!?"
I can't really find the way to trust some benevolent god or angels or universal flow.
But what is clear to me is that I CAN trust "just this". I can trust that each day I have what it takes and Tad has what it takes to stay connected and remain hopeful for that day.
Not surprisingly our friends and family weren't really eager to say the ultimate good-bye to Tad, nor were we, truth be told. Instead of being a trip about sorrow it was a simple road trip about life, about saguaro cacti and giant orange boulders, about hummingbirds and mediocre novels, popcorn in front of the TV with family, barbecue ribs and apple orchard forays, chatting with friends and enjoying the journey.
It was a trip about just this.
[EPILOGUE: Since first posting this Tad had a bone marrow biopsy - a lovely procedure in which they bore a hole in his hip bone to take out a sample. It indicated some cancer activity in the blood meaning it's best that he get more chemo before getting a transplant. We called Seattle to see if we should come or stay and they recommended we come up after this next round of chemo. By then they will have had time to find a donor match as well. Deeeeeep breath....]
Tuesday, November 2, 2010
Friday, September 3, 2010
last night's dream
(Note: I wrote this blog early into Tad's chemo on Sept 3. His hospital stay is almost over and it was a rough ride. An infection migrated to his kidneys and liver around day 10 rendering him weak, confused, aggressive and -fortunately- mostly amnesic. He is better now. I discovered in that period that when my fear gets the biggest - I stop communicating with the outside world. Good to know for the future...)
Last night I had a lengthy dream about a former lover of mine and myself. We were involved in a complex adventure to get out of a country. Our escape plan included border patrol, trains, walls to climb and buildings to skirt. Our plan was genius and --it was quite clear to me-- would get us around and beyond all these obstacles. But in the end for reasons I couldn't grasp he decided to stay on the train just as we were supposed to hop off. He knew he was sick and that our escape plan would exact too much of a toll on his body. I wept as the train rolled away.
But shortly after hopping off, I suddenly found myself back in my home country in a fancy restaurant trying to explain my sorrow to acquaintances who just didn't understand.
Tad is back in the hospital for round three of chemotherapy - politely called "consolidation".
This is a good thing we're told: round two managed to put him into remission and consolidation will prepare him for the grand slam, a bone marrow transplant. The not so good new is we're also told that given Tad's particular make-up this final and necessary round can only be conducted in Seattle, Washington. For those unlucky souls who have yet to discover the beauty of the Pacific Coast, Seattle is about 15 hours by car from San Francisco.
Thus yesterday we found ourselves calling there to find out about housing, length of stay, prices, to try to understand what is covered by Tad's insurance and more importantly what is not. My mind began wandering as some sweet woman explained to me how certain insurances crossed state lines and others didn't. Within a short time my head was spinning with uncertainty. It's not impossible by any means but it may mean an expensive stay, for at least two months, away from our community, in a city we don't know. It's not clear to me how much I'll be able to stay there while Tad is undergoing all of this and how much I'll need to be in San Francisco.
Tad once told me (wisely) that it's important to look at the past, but just as important not to stare. As we cross this strange leukemia desert together I see that the idiom holds true for the future as well. It's important to look ahead and see the goal in the distance but it's equally important to come back quickly to the present, to our feet in the sand, the breeze on our skin, to one foot in front of the other.
What my dream reminded me of, a notion I like to leave out of my everyday thinking, is the painful idea that we may not get to our destination together. Cancer has already separated us in a way; he has it in his body, I have it in my heart. Occasionally this reality leaves us with a gulf of misunderstanding at times hard to overcome.
Then we have moments like the one we had two nights ago in which I put his hospital bed up high, turned down the lights, pulled the curtain to block out glances from passersby, put on Brian Eno's Airport Music and gave him a delicious massage to try to ease the throbbing headaches he's been experiencing this time around. Afterward we sat holding hands, watching a brilliant Swedish thriller that had me gasping like a school girl. In those moments we remember that we are still side by side in this journey, just living it from different angles.
In the final scene of last night's dream I get up from the table to go the bathroom only to discover that the toilet is in the middle of a vast, bustling, 19th century dining room full of elegant diners, all of whom can see me doing my business.
A lovely metaphor.
Here I sit with those normally-not-seen parts of my life in full view: at times I cry on the subway or while shopping for my weekly groceries. The good news is I no longer hear those old playground voices: "Boys don't cry", "Be strong", "What will people think?" I just sit and do my business.
It's just life folks. Go back to your meals.
Last night I had a lengthy dream about a former lover of mine and myself. We were involved in a complex adventure to get out of a country. Our escape plan included border patrol, trains, walls to climb and buildings to skirt. Our plan was genius and --it was quite clear to me-- would get us around and beyond all these obstacles. But in the end for reasons I couldn't grasp he decided to stay on the train just as we were supposed to hop off. He knew he was sick and that our escape plan would exact too much of a toll on his body. I wept as the train rolled away.
But shortly after hopping off, I suddenly found myself back in my home country in a fancy restaurant trying to explain my sorrow to acquaintances who just didn't understand.
Tad is back in the hospital for round three of chemotherapy - politely called "consolidation".
This is a good thing we're told: round two managed to put him into remission and consolidation will prepare him for the grand slam, a bone marrow transplant. The not so good new is we're also told that given Tad's particular make-up this final and necessary round can only be conducted in Seattle, Washington. For those unlucky souls who have yet to discover the beauty of the Pacific Coast, Seattle is about 15 hours by car from San Francisco.
Thus yesterday we found ourselves calling there to find out about housing, length of stay, prices, to try to understand what is covered by Tad's insurance and more importantly what is not. My mind began wandering as some sweet woman explained to me how certain insurances crossed state lines and others didn't. Within a short time my head was spinning with uncertainty. It's not impossible by any means but it may mean an expensive stay, for at least two months, away from our community, in a city we don't know. It's not clear to me how much I'll be able to stay there while Tad is undergoing all of this and how much I'll need to be in San Francisco.
Tad once told me (wisely) that it's important to look at the past, but just as important not to stare. As we cross this strange leukemia desert together I see that the idiom holds true for the future as well. It's important to look ahead and see the goal in the distance but it's equally important to come back quickly to the present, to our feet in the sand, the breeze on our skin, to one foot in front of the other.
What my dream reminded me of, a notion I like to leave out of my everyday thinking, is the painful idea that we may not get to our destination together. Cancer has already separated us in a way; he has it in his body, I have it in my heart. Occasionally this reality leaves us with a gulf of misunderstanding at times hard to overcome.
Then we have moments like the one we had two nights ago in which I put his hospital bed up high, turned down the lights, pulled the curtain to block out glances from passersby, put on Brian Eno's Airport Music and gave him a delicious massage to try to ease the throbbing headaches he's been experiencing this time around. Afterward we sat holding hands, watching a brilliant Swedish thriller that had me gasping like a school girl. In those moments we remember that we are still side by side in this journey, just living it from different angles.
In the final scene of last night's dream I get up from the table to go the bathroom only to discover that the toilet is in the middle of a vast, bustling, 19th century dining room full of elegant diners, all of whom can see me doing my business.
A lovely metaphor.
Here I sit with those normally-not-seen parts of my life in full view: at times I cry on the subway or while shopping for my weekly groceries. The good news is I no longer hear those old playground voices: "Boys don't cry", "Be strong", "What will people think?" I just sit and do my business.
It's just life folks. Go back to your meals.
Thursday, July 15, 2010
words
My motto lately has been "More silence, fewer words". I've actually stopped my own psychotherapy and begun working with a meditation coach. I see now that this has also impacted my blog.
The last three weeks have been mostly about sitting uncomfortably with Tad's immune system at Zero - the goal of chemo for leukemia. Then waiting for it to rebuild itself.
The first phase lasted a good 12 days, the second took about 3!
During these times of waiting it is very tempting to fill the wait with all kinds of words/thoughts/scenarios. I have found that the very best way for me to go through this is one day at a time allowing myself to only have thoughts and feelings about what is actually in front of me and not my scary fantasies.
Last night, quite unpleasantly, the staff sent us hiking. We no longer qualified for the more specialized-care bed of a chemo patient and were sent to the lower realms of the liver-transplant folks which was so calm it looks like it's about to go out of business. Tad has actually been on the 14th floor of a unit which has its HQ on the 11th floor but because they don't have enough beds they borrow 10 rooms from the 11th floor.
The highlight of the 30 days in hospital was a few hours of birthday party in the "Solarium" (think big corner office with lots of windows and ugly furniture) which we managed to turn into something almost warm and welcoming. Tad got special permission to get off the ward as long as he wore a face mask between the two worlds. Sweet friends came with cards, gifts and hugs.
The other highlight was actually a darker moment. Around day 10 we discovered that contrary to what we had been told, this was not round 2 of 3 but instead round 2 of 4. It seems that the misunderstanding stems from the previous doctor's declaration of remission being a bit premature. Apparently further data came back indicating that Tad's cancer wasn't entirely in remission. Thus this last round of chemo wass intended to eradicate it as much as possible - the absolute prerequisite before doing the "transplant" that will hopefully keep him cancer-free.
This "transplant" consists in giving Tad an immune stimulant in order to build up his immune system into a mega-immune system. At that point they will put him on a sort of dialysis machine and extract his life-giving stem cells from his blood. These will be frozen then re-injected into his body after Round 4 of chemo. They are the seedlings that are meant to keep him cancer free.
In essence the procedure has two basic principles: 1 - eradicate all immune system good and bad several times and let the good rebuild itself hopefully without the bad and 2 - give the good cells an extra boost by fertilizing them with your own previously produced good stuff.
We will know in about 2 weeks if Tad has achieved remission - this will be based on the results of a bone marrow biopsy to be conducted in 10-14 days. If he doesn't hit remission the doctors will elaborate a second strategy.
In the meantime we return to the slow sweet life of Santa Cruz: kitty, gardens, neighbors, friends, walks along the ocean, breakfasts in Seabright.
This stay will also include the highly-anticipated visit of my 13 year old godson and his parents from Bordeaux. He's looking forward to hanging out with Tad and me (and riding the rides at the Boardwalk!)
The last three weeks have been mostly about sitting uncomfortably with Tad's immune system at Zero - the goal of chemo for leukemia. Then waiting for it to rebuild itself.
The first phase lasted a good 12 days, the second took about 3!
During these times of waiting it is very tempting to fill the wait with all kinds of words/thoughts/scenarios. I have found that the very best way for me to go through this is one day at a time allowing myself to only have thoughts and feelings about what is actually in front of me and not my scary fantasies.
Last night, quite unpleasantly, the staff sent us hiking. We no longer qualified for the more specialized-care bed of a chemo patient and were sent to the lower realms of the liver-transplant folks which was so calm it looks like it's about to go out of business. Tad has actually been on the 14th floor of a unit which has its HQ on the 11th floor but because they don't have enough beds they borrow 10 rooms from the 11th floor.
The highlight of the 30 days in hospital was a few hours of birthday party in the "Solarium" (think big corner office with lots of windows and ugly furniture) which we managed to turn into something almost warm and welcoming. Tad got special permission to get off the ward as long as he wore a face mask between the two worlds. Sweet friends came with cards, gifts and hugs.
The other highlight was actually a darker moment. Around day 10 we discovered that contrary to what we had been told, this was not round 2 of 3 but instead round 2 of 4. It seems that the misunderstanding stems from the previous doctor's declaration of remission being a bit premature. Apparently further data came back indicating that Tad's cancer wasn't entirely in remission. Thus this last round of chemo wass intended to eradicate it as much as possible - the absolute prerequisite before doing the "transplant" that will hopefully keep him cancer-free.
This "transplant" consists in giving Tad an immune stimulant in order to build up his immune system into a mega-immune system. At that point they will put him on a sort of dialysis machine and extract his life-giving stem cells from his blood. These will be frozen then re-injected into his body after Round 4 of chemo. They are the seedlings that are meant to keep him cancer free.
In essence the procedure has two basic principles: 1 - eradicate all immune system good and bad several times and let the good rebuild itself hopefully without the bad and 2 - give the good cells an extra boost by fertilizing them with your own previously produced good stuff.
We will know in about 2 weeks if Tad has achieved remission - this will be based on the results of a bone marrow biopsy to be conducted in 10-14 days. If he doesn't hit remission the doctors will elaborate a second strategy.
In the meantime we return to the slow sweet life of Santa Cruz: kitty, gardens, neighbors, friends, walks along the ocean, breakfasts in Seabright.
This stay will also include the highly-anticipated visit of my 13 year old godson and his parents from Bordeaux. He's looking forward to hanging out with Tad and me (and riding the rides at the Boardwalk!)
Friday, June 25, 2010
life at UCSF
It's a good thing when one doesn't have much to report about living with cancer.
A really good thing.
Life in captivity at UCSF has proven to be much better than at CPMC our previous hospital.
Staff are just as competent (as far as we non-cancer specialists can tell) but they are also more multi-dimensioned, more human. They share with us little bits about themselves and are willing to have real conversations that go beyond white blood cell chat and platelet babble.
Karen showed us her tattoos, Angie told us about her house in Hawaii and the incredible hibiscus she found, Ramella told us how she misses the East Coast summer evenings.
They also have one more level of care that was lacking at the previous hospital. In essence Tad's care was in the hand of a brilliant CEO who appeared for five minutes at the end of every day and pulled all the strings in his absence. He was prompt, business-like, cordial but not warm. During the day the only non-nursing person we saw were interns who seemed to be precocious 16 year olds who regularly replied "I don't know, I'll check with Dr Baron."
At UCSF we never see our CEO and we never see the interns but we have an "attending" physician who's a grown up, proper oncologist who visits twice a day and is in contact with said CEO. He too is a clearly a geek and it pains me to see what a hard time he has making eye contact while conversing with us but he's willing to sit, to talk, to answer tough questions. Once he even revealed a bit about himself and his family.
Just as frequently we see Nurse Practitioners who also know a lot about the medicine and can have the all-important power to prescribe. They are a funny lot but the recipe seems quite simple: picture a physician, take away all the narcissism and add a heart. Voila.
Another subtle difference but an important one is the way we are recognized as a couple. The previous hospital was by no means uncomfortable with us being gay but it was simply tolerated. Here staff purposefully support us, openly express care for us as a family, regularly inquire about us as a loving unit worthy of respect and, dare I say, celebration.
To add a cherry to the cake we know several people who work at UCSF so it's quite sweet to have old friends pop in and say hello, lie down on the beds with us and watch some TV or bring us yummy stuff from the cafe.
The next few days will be the hardest. Tad's immune system is slowly disappearing because of the chemo. The last, most aggressive LEJ was given to him on Tuesday. LEJ is Tad's name for it: Leukemia Eradication Juice (I came up with Leukemia Obliteration and Vivacity Enhancing Tonic ie L.O.V.E. Tonic but Tad thought that was way too touchy-feely). On that day a nurse had to be present all day in case his vitals plummeted from the toxicity of the Juice. For the first time we saw them bring in a bottle using ALL the precautions (mask, gown, double gloves!). The worst thing he experienced was a throbbing headache.
What is clear to us now is that when Tad arrived for Round One, unbenownst to us, his immune system was already shot through with leukemia. His whole experience of chemo was far more complicated by multiple symptoms, none of which has reared its ugly head this time around. He will no doubt hit the low point in about three days (this is called the Nadir which makes me smile and think of Ralph every time I hear it).
As I write this I wonder how much his physical state coupled with our emotional states might have had an effect on these professional relationships. Perhaps the first team, like us, was far more concerned about Tad's death and simply didn't want to get too personal. Today when people walk into his room they find the two of us mostly relaxed, openly loving, reading, writing, watching TV, giggling, usually only crying when cards and other expressions of love arrive. The specter of his death seems to have taken a step or two back and we're all breathing a little more freely for it.
A really good thing.
Life in captivity at UCSF has proven to be much better than at CPMC our previous hospital.
Staff are just as competent (as far as we non-cancer specialists can tell) but they are also more multi-dimensioned, more human. They share with us little bits about themselves and are willing to have real conversations that go beyond white blood cell chat and platelet babble.
Karen showed us her tattoos, Angie told us about her house in Hawaii and the incredible hibiscus she found, Ramella told us how she misses the East Coast summer evenings.
They also have one more level of care that was lacking at the previous hospital. In essence Tad's care was in the hand of a brilliant CEO who appeared for five minutes at the end of every day and pulled all the strings in his absence. He was prompt, business-like, cordial but not warm. During the day the only non-nursing person we saw were interns who seemed to be precocious 16 year olds who regularly replied "I don't know, I'll check with Dr Baron."
At UCSF we never see our CEO and we never see the interns but we have an "attending" physician who's a grown up, proper oncologist who visits twice a day and is in contact with said CEO. He too is a clearly a geek and it pains me to see what a hard time he has making eye contact while conversing with us but he's willing to sit, to talk, to answer tough questions. Once he even revealed a bit about himself and his family.
Just as frequently we see Nurse Practitioners who also know a lot about the medicine and can have the all-important power to prescribe. They are a funny lot but the recipe seems quite simple: picture a physician, take away all the narcissism and add a heart. Voila.
Another subtle difference but an important one is the way we are recognized as a couple. The previous hospital was by no means uncomfortable with us being gay but it was simply tolerated. Here staff purposefully support us, openly express care for us as a family, regularly inquire about us as a loving unit worthy of respect and, dare I say, celebration.
To add a cherry to the cake we know several people who work at UCSF so it's quite sweet to have old friends pop in and say hello, lie down on the beds with us and watch some TV or bring us yummy stuff from the cafe.
The next few days will be the hardest. Tad's immune system is slowly disappearing because of the chemo. The last, most aggressive LEJ was given to him on Tuesday. LEJ is Tad's name for it: Leukemia Eradication Juice (I came up with Leukemia Obliteration and Vivacity Enhancing Tonic ie L.O.V.E. Tonic but Tad thought that was way too touchy-feely). On that day a nurse had to be present all day in case his vitals plummeted from the toxicity of the Juice. For the first time we saw them bring in a bottle using ALL the precautions (mask, gown, double gloves!). The worst thing he experienced was a throbbing headache.
What is clear to us now is that when Tad arrived for Round One, unbenownst to us, his immune system was already shot through with leukemia. His whole experience of chemo was far more complicated by multiple symptoms, none of which has reared its ugly head this time around. He will no doubt hit the low point in about three days (this is called the Nadir which makes me smile and think of Ralph every time I hear it).
As I write this I wonder how much his physical state coupled with our emotional states might have had an effect on these professional relationships. Perhaps the first team, like us, was far more concerned about Tad's death and simply didn't want to get too personal. Today when people walk into his room they find the two of us mostly relaxed, openly loving, reading, writing, watching TV, giggling, usually only crying when cards and other expressions of love arrive. The specter of his death seems to have taken a step or two back and we're all breathing a little more freely for it.
Friday, June 18, 2010
Same-same but different
It’s been four days since Tad and I stepped back into a hospital again – this time for Round Two of three month-long chemo sessions.
Many things are familiar: a button to push when you need help, a functional box where no matter what you do the furniture never quite flows, people coming and going all day monitoring what goes in and out of his body, oh so sweet nursing staff and slightly geeky, brilliant medical staff.
But things are also quite different.
Yes we are in a new hospital with new rules (for instance they don’t want me to pee in his toilet for fear the toxins he’s urinating might splash up and get on my skin!). Yes the view is less fabulous (we look out on a massive eucalyptus - covered hill with only the top of Sutro Tower as a visual distraction). Yes the names and faces are all brand new (somehow their oncologists seem a bit more capable of empathy and relatedness).
But what is mostly different is us.
Unlike the first hospitalization which started with Tad quite sick from a sudden bout with pneumonia which luckily clued us in to the fact that his white blood cells were rapidly turning into Borgs, this time around Tad is beaming with health. Two days before being admitted we were working hard in the yard, he was cleaning the garage, schlepping the green trash cans, porting heavy bags of mulch, digging and planting new plants. He was eating well and actively preparing for the one month absence. After a few days of struggling with depression in the beginning he had had the realization that he needed to stay busy and connected during his time home. And it worked like a charm.
It is not til now that I see how much the pain from the pneumonia (and some minor surgery he’d had two days previously) had profoundly affected the way he experienced his first round of chemo. It also deeply impacted me since there seems to be a direct connection between his experiencing pain and my squirming like a school girl, wanting to accost the first medically-inclined person who goes by to make it all go away NOW!
The down side, as he pointed out yesterday, is that he has to go through chemo with his eyes wide open this time, none of that slightly dulling experience of major analgesics to keep a gentle veil between him and reality.
We’re also different in that we know what to expect this time unlike the first round when every cough or spike in fever appeared– in my fearful brain—like the announcement of the last days.
I suppose the most obvious way we are different –and words suddenly fail me -- is that somehow we are perhaps more present to daily life.
The gentle rhythm we had developed during our one-month break seems to have a lasting effect on our life today. We seem closer to our tears and our laughter comes more easily. We are more loving, more tactile, more peaceful. We seem to be grounded in our love in a palpable way.
Our squabbles are brief and almost warm – like when Tad insisted on stopping at Kohl’s to buy new pajama bottoms during our frantic drive from Santa Cruz while I was dead-set on trying to get to the hospital at the agreed-upon time I had painfully extracted from the charge nurse.
(For those who like to know how stories end: We only arrived a half hour late after rushing by my place and miraculously finding parking IN FRONT of the hospital. But by then I was so agitated that I managed to lash out at the young man in Admissions who grunted his greeting at us and then again at the nurse who put us in a room with a loud, angry, middle-aged man who wouldn’t turn down his BLARING gun show on TV and complained loudly because we wanted to turn on the light. Fortunately they kindly moved Tad to his own room.)
If all goes well Tad will be out of the hospital on Bastille Day – all ready for another month of R & R and a visit from my 13 year old godson from Bordeaux.
In the meantime please call Tad now and then (415-514-5413), skype him (thaddeus67) or send him a card (Tad Crandall, Rm 1404, UCSF, 505 Parnassus Box 0290, SF, CA, 94143-0290).
Despite Luke Wilson's promises and the extra thirty bucks a month we both pay for the super fast 3G network, we can’t receive a single call on our cellphones in the hospital.
Many things are familiar: a button to push when you need help, a functional box where no matter what you do the furniture never quite flows, people coming and going all day monitoring what goes in and out of his body, oh so sweet nursing staff and slightly geeky, brilliant medical staff.
But things are also quite different.
Yes we are in a new hospital with new rules (for instance they don’t want me to pee in his toilet for fear the toxins he’s urinating might splash up and get on my skin!). Yes the view is less fabulous (we look out on a massive eucalyptus - covered hill with only the top of Sutro Tower as a visual distraction). Yes the names and faces are all brand new (somehow their oncologists seem a bit more capable of empathy and relatedness).
But what is mostly different is us.
Unlike the first hospitalization which started with Tad quite sick from a sudden bout with pneumonia which luckily clued us in to the fact that his white blood cells were rapidly turning into Borgs, this time around Tad is beaming with health. Two days before being admitted we were working hard in the yard, he was cleaning the garage, schlepping the green trash cans, porting heavy bags of mulch, digging and planting new plants. He was eating well and actively preparing for the one month absence. After a few days of struggling with depression in the beginning he had had the realization that he needed to stay busy and connected during his time home. And it worked like a charm.
It is not til now that I see how much the pain from the pneumonia (and some minor surgery he’d had two days previously) had profoundly affected the way he experienced his first round of chemo. It also deeply impacted me since there seems to be a direct connection between his experiencing pain and my squirming like a school girl, wanting to accost the first medically-inclined person who goes by to make it all go away NOW!
The down side, as he pointed out yesterday, is that he has to go through chemo with his eyes wide open this time, none of that slightly dulling experience of major analgesics to keep a gentle veil between him and reality.
We’re also different in that we know what to expect this time unlike the first round when every cough or spike in fever appeared– in my fearful brain—like the announcement of the last days.
I suppose the most obvious way we are different –and words suddenly fail me -- is that somehow we are perhaps more present to daily life.
The gentle rhythm we had developed during our one-month break seems to have a lasting effect on our life today. We seem closer to our tears and our laughter comes more easily. We are more loving, more tactile, more peaceful. We seem to be grounded in our love in a palpable way.
Our squabbles are brief and almost warm – like when Tad insisted on stopping at Kohl’s to buy new pajama bottoms during our frantic drive from Santa Cruz while I was dead-set on trying to get to the hospital at the agreed-upon time I had painfully extracted from the charge nurse.
(For those who like to know how stories end: We only arrived a half hour late after rushing by my place and miraculously finding parking IN FRONT of the hospital. But by then I was so agitated that I managed to lash out at the young man in Admissions who grunted his greeting at us and then again at the nurse who put us in a room with a loud, angry, middle-aged man who wouldn’t turn down his BLARING gun show on TV and complained loudly because we wanted to turn on the light. Fortunately they kindly moved Tad to his own room.)
If all goes well Tad will be out of the hospital on Bastille Day – all ready for another month of R & R and a visit from my 13 year old godson from Bordeaux.
In the meantime please call Tad now and then (415-514-5413), skype him (thaddeus67) or send him a card (Tad Crandall, Rm 1404, UCSF, 505 Parnassus Box 0290, SF, CA, 94143-0290).
Despite Luke Wilson's promises and the extra thirty bucks a month we both pay for the super fast 3G network, we can’t receive a single call on our cellphones in the hospital.
Saturday, May 29, 2010
home... with a glimpse of the future
It seems, when one has cancer, there is actually something really positive about medical staff coming and going all day long, poking and prodding, checking and verifying this or that.
We both thought that having Tad comfortably back in his home would be the healthiest possible thing for him.
But sitting at home, with post-chemo fatigue and knowing in a couple weeks it will be back to chemo hell again, makes it hard to really engage in life fully.
It seems easier for me than for Tad. I can whip up a daily list of things to do in a heart beat. I can keep my nose on my list and fill my days so that by evening I feel a sense of accomplishment. Clearly right now that's tough for him. The usual pleasures of gardening, going to movies, shopping and doodling on the computer have lost their appeal. And seeing him like this feeds my own fears that somehow it will hasten his death.
Curiously this is the opposite of our dynamic at the hospital where I tend to be the one feeling glum, goal-less and prone to fear while he - in the thick of the action - seems to be more upbeat, even on the most hellish diarrhea/fever/shakes/chemo days.
He will be back in the hospital in about two weeks. This time it will be at UCSF where we have already met the new oncologist, Dr Thomas Martin.
He laid out the plan for the next stages of treatment:
- One month in the hospital for a second round of chemo starting mid-June,
- Most of July at home for rest,
- Most of August in the hospital again for a third round of chemo plus a bone marrow transfusion - which may have to be done in LA,
- Most of September at home.
He was cautious to offer us statistics, possibility of survival, etc but he did hold some hope. He was cordial, purposeful, and visibly quite popular.
In the waiting room, unlike at the previous more posh hospital, we were able to meet with other people with leukemia. Because UCSF is THE leukemia center in the Bay Area people come from all over to get care there. Next to us was a 23 year old guy from Modesto. His mom explained he'd just finished recuperating from a bone marrow transfusion. He looked great.
This new oncologist explained the "remission" we've been so excited about has basically just got us to about one third of our goal. His job is to take us the other two thirds of the trip. He also explained that the original genetic information we'd received about this particular form of leukemia was incomplete. Further studies have shown that in fact Tad's cancer falls in the most difficult to cure camp of the three types.
Needless to say - we came home from this first encounter with a new doc feeling both hopeful and yet quite beleaguered and weepy.
Tad asked that I spend more time with him in Santa Cruz where I am enjoying the warm days (81 compared to 67 in SF) and doting on the vegetable garden which various friends lovingly kept on track during the last round of chemo. Since I am focused on preparing for the boards i.e. studying - it's easy for me to do.
The good news is we have to time to prepare for the next rounds. If you are willing to help out by being on a team of people who take care of Tad's cat, garden and house (and sometimes his husband) during the hospital stints please let me know. We hope to get a group of folks organized in SC who can share the burden.
We both thought that having Tad comfortably back in his home would be the healthiest possible thing for him.
But sitting at home, with post-chemo fatigue and knowing in a couple weeks it will be back to chemo hell again, makes it hard to really engage in life fully.
It seems easier for me than for Tad. I can whip up a daily list of things to do in a heart beat. I can keep my nose on my list and fill my days so that by evening I feel a sense of accomplishment. Clearly right now that's tough for him. The usual pleasures of gardening, going to movies, shopping and doodling on the computer have lost their appeal. And seeing him like this feeds my own fears that somehow it will hasten his death.
Curiously this is the opposite of our dynamic at the hospital where I tend to be the one feeling glum, goal-less and prone to fear while he - in the thick of the action - seems to be more upbeat, even on the most hellish diarrhea/fever/shakes/chemo days.
He will be back in the hospital in about two weeks. This time it will be at UCSF where we have already met the new oncologist, Dr Thomas Martin.
He laid out the plan for the next stages of treatment:
- One month in the hospital for a second round of chemo starting mid-June,
- Most of July at home for rest,
- Most of August in the hospital again for a third round of chemo plus a bone marrow transfusion - which may have to be done in LA,
- Most of September at home.
He was cautious to offer us statistics, possibility of survival, etc but he did hold some hope. He was cordial, purposeful, and visibly quite popular.
In the waiting room, unlike at the previous more posh hospital, we were able to meet with other people with leukemia. Because UCSF is THE leukemia center in the Bay Area people come from all over to get care there. Next to us was a 23 year old guy from Modesto. His mom explained he'd just finished recuperating from a bone marrow transfusion. He looked great.
This new oncologist explained the "remission" we've been so excited about has basically just got us to about one third of our goal. His job is to take us the other two thirds of the trip. He also explained that the original genetic information we'd received about this particular form of leukemia was incomplete. Further studies have shown that in fact Tad's cancer falls in the most difficult to cure camp of the three types.
Needless to say - we came home from this first encounter with a new doc feeling both hopeful and yet quite beleaguered and weepy.
Tad asked that I spend more time with him in Santa Cruz where I am enjoying the warm days (81 compared to 67 in SF) and doting on the vegetable garden which various friends lovingly kept on track during the last round of chemo. Since I am focused on preparing for the boards i.e. studying - it's easy for me to do.
The good news is we have to time to prepare for the next rounds. If you are willing to help out by being on a team of people who take care of Tad's cat, garden and house (and sometimes his husband) during the hospital stints please let me know. We hope to get a group of folks organized in SC who can share the burden.
Sunday, May 23, 2010
normalcy...or almost
Wednesday afternoon I joined Tad in Santa Cruz where he had finally arrived forty-eight hours earlier thanks to the loving Carl who agreed to fetch him in San Francisco and drive him home (during rush hour!!).
I had been looking forward to being there when Tad was finally reunited with his/our cat and garden but unfortunately I was in the Midwest attending a gathering with my family of origin.
I suppose it was silly of me to build up expectations: I had this fantasy that we would spend our month-long inter-regnum period (between two doctors) doing things that bolster Tad's health like daily walks, morning meditations, time in the vegetable garden, seeing friends.
Instead we came back to our usual routine of being quite domestic only --thanks to a mention from the doctor about being particularly vulnerable to bugs--we're even more domestic.
Tad is more tired than I expected. He can't put his hands in dirt - no doubt the single most healing thing he loves to do. He can't go near the cat litter box and has to be careful not to play too rough with her for fear of open scratches.
The first day he spouted his anger at the fact that he doesn't even really get a proper one month break: the next oncologist already has him down for coming to San Francisco to meet and do some lab work in a few days.
"I was planning on staying away from a frigging hospital for a month," he said to me.
The next oncologist is a bone marrow transplant specialist.
It seems the most promising procedure for long-term cancer-free living is a bone marrow transplant (many of which are done with one's own bone marrow cells causing a etymological conundrum in my opinion), a very painful and potentially lethal affair.
In essence people who get transplants instead of just chemo actually live longer with no sign of cancer returning after five years however they are more at risk of dying during the procedure than folks who just get chemo. The good news is that all of the data we see on AML are skewed by the fact that the median age of someone with this ailment is 67 years old (around 4% of people with AML are actually in Tad's age range).
So I keep praying that, in the same way he surprised everyone at the previous hospital by his robust return to health after chemo, he will surprise them all yet again.
But the part of me who fantasizes about some Hollywood version of Tad walking daily along the beach with me, sometimes twice a day, to slowly rebuild muscle mass, lung capacity, heart rate; the part of me that imagined some other version of Tad transformed by the specter of death into some go-getting extroverted super hero is letting go slowly and remembering how amazingly well he knows what is good for him. Right now it is lots of rest, reading and lying low. My job is to love him and calm my own fears that that might not be enough to keep him alive through the next round of hell.
I had been looking forward to being there when Tad was finally reunited with his/our cat and garden but unfortunately I was in the Midwest attending a gathering with my family of origin.
I suppose it was silly of me to build up expectations: I had this fantasy that we would spend our month-long inter-regnum period (between two doctors) doing things that bolster Tad's health like daily walks, morning meditations, time in the vegetable garden, seeing friends.
Instead we came back to our usual routine of being quite domestic only --thanks to a mention from the doctor about being particularly vulnerable to bugs--we're even more domestic.
Tad is more tired than I expected. He can't put his hands in dirt - no doubt the single most healing thing he loves to do. He can't go near the cat litter box and has to be careful not to play too rough with her for fear of open scratches.
The first day he spouted his anger at the fact that he doesn't even really get a proper one month break: the next oncologist already has him down for coming to San Francisco to meet and do some lab work in a few days.
"I was planning on staying away from a frigging hospital for a month," he said to me.
The next oncologist is a bone marrow transplant specialist.
It seems the most promising procedure for long-term cancer-free living is a bone marrow transplant (many of which are done with one's own bone marrow cells causing a etymological conundrum in my opinion), a very painful and potentially lethal affair.
In essence people who get transplants instead of just chemo actually live longer with no sign of cancer returning after five years however they are more at risk of dying during the procedure than folks who just get chemo. The good news is that all of the data we see on AML are skewed by the fact that the median age of someone with this ailment is 67 years old (around 4% of people with AML are actually in Tad's age range).
So I keep praying that, in the same way he surprised everyone at the previous hospital by his robust return to health after chemo, he will surprise them all yet again.
But the part of me who fantasizes about some Hollywood version of Tad walking daily along the beach with me, sometimes twice a day, to slowly rebuild muscle mass, lung capacity, heart rate; the part of me that imagined some other version of Tad transformed by the specter of death into some go-getting extroverted super hero is letting go slowly and remembering how amazingly well he knows what is good for him. Right now it is lots of rest, reading and lying low. My job is to love him and calm my own fears that that might not be enough to keep him alive through the next round of hell.
Saturday, May 15, 2010
phase one: nearly over
While I was sitting at the airport waiting to embark on a flight to see family in Michigan Tad called me from the hospital.
"Are you sitting down?"
I could tell from the lilt in his voice that it was good news though one part of my brain did think "oh shit! what now?"
It's the same part of my brain that has a little mini-panic every time I call and can't get through by phone.
I know the signal isn't great in that room, I know he doesn't always hear his cellphone ring, I know he can't rush and grab it if he's in the bathroom. Still my first thought is: "There's something wrong."
So I was delighted when he told me he was going home on Monday.
This threw a little bit of a wobbly into our plans since I was hoping to drive him down to Santa Cruz myself AFTER my extended weekend visiting family and attending a wedding. A Monday discharge would make that impossible.
The star of this whole show is without a doubt Tad's immune system. It has surprised even the most seasoned doctors by its resilience. It has made liars out of a couple more who promised us hair falling out, possible opportunistic infections and a slow rebuilding of his immunity - at least three weeks. But the actual healthy results would be very disappointing to any decent disaster lover.
He will be back at the hospital in a month for a second round of chemo but in the meantime he gets to go back to Santa Cruz and relax, get back to living life.
We seem to have won the first battle even if we have by no means won the war.
I can still remember only a few weeks ago discovering my favorite moment of the day. Very early in the morning, just as I was waking up, in that 10 or so seconds that it takes me to step out of my dreams and into my real life I was able to both be awake AND not be aware that my beloved may be dying.
Then after this very brief hiatus reality struck. I reminded myself: Oh yes Tad has leukemia. And the pit of sorrow started up yet again.
How much our worlds can change in just a few weeks (and sometimes even in the blink of an eye).
"Are you sitting down?"
I could tell from the lilt in his voice that it was good news though one part of my brain did think "oh shit! what now?"
It's the same part of my brain that has a little mini-panic every time I call and can't get through by phone.
I know the signal isn't great in that room, I know he doesn't always hear his cellphone ring, I know he can't rush and grab it if he's in the bathroom. Still my first thought is: "There's something wrong."
So I was delighted when he told me he was going home on Monday.
This threw a little bit of a wobbly into our plans since I was hoping to drive him down to Santa Cruz myself AFTER my extended weekend visiting family and attending a wedding. A Monday discharge would make that impossible.
The star of this whole show is without a doubt Tad's immune system. It has surprised even the most seasoned doctors by its resilience. It has made liars out of a couple more who promised us hair falling out, possible opportunistic infections and a slow rebuilding of his immunity - at least three weeks. But the actual healthy results would be very disappointing to any decent disaster lover.
He will be back at the hospital in a month for a second round of chemo but in the meantime he gets to go back to Santa Cruz and relax, get back to living life.
We seem to have won the first battle even if we have by no means won the war.
I can still remember only a few weeks ago discovering my favorite moment of the day. Very early in the morning, just as I was waking up, in that 10 or so seconds that it takes me to step out of my dreams and into my real life I was able to both be awake AND not be aware that my beloved may be dying.
Then after this very brief hiatus reality struck. I reminded myself: Oh yes Tad has leukemia. And the pit of sorrow started up yet again.
How much our worlds can change in just a few weeks (and sometimes even in the blink of an eye).
Wednesday, May 12, 2010
murmurs of home
The strangest thing happened yesterday.
Quoting a conversation with the oncologist two days ago, Tad will be staying in the hospital another two weeks so he can rebuild his immune system and gain strength. This would make it safe for him to be in the outside world without catching any kind of bug or bleed to death from a minor injury.
Then yesterday the infectious disease doc (the person in charge of managing the infections that come up while the oncologist blasts the hell out of his immune system) suggested he may be going home as early as this weekend.
She says that his immune system is rebuilding itself very quickly, unusually quickly.
The ironic part is that Tad presently has what is no doubt the most impressive symptom he's had since the beginning (well maybe second to the shaking shivers): nearly all of his upper body is covered in a splotchy rash that no one can explain and I'm sparing you the details in my description of the rash. It doesn't hurt per se, it doesn't itch, it just bubbles up and spreads.
Two days ago he was able to take a long hot shower, one of the great luxury moments he's allowed every few days. This consists in taking him off all the lovely tubes for about 20 minutes. The staff then wrap the catheter on his arm with a plastic bag, taping it sealed at both ends. Et voila!
After the shower I helped him dry off his back which was free of any rash at all. It was just on his arms, his forehead and his upper chest.
So yesterday I was quite shocked to discover when I lifted his shirt that it had developed across his entire back. I suggested we call the nurse to explain that this was becoming urgent and that perhaps something could be done to stop the spreading while waiting for the results of the biopsy they'd finally taken that morning.
When she arrived she didn't know what to do so we asked her to call the attending doctor and explain that it had doubled in size in less than twenty-four hours. Thrown off balance no doubt by our request and steadfast in her role to play bumper cars between docs and patients, she replied "Rash?, What rash?"
This only maddened Tad (and me). So we began to rummage for the doctor's business card which she had left with a smile and a "Call me anytime" the first time we met.
Apparently she didn't really mean "anytime". I got a human message service asking for a concise message. Who knew those still existed?
The nurse left and called the same doctor from another line. She came back to the room a few minutes later saying that the doctor was sure it was nothing serious and that she'd be in the next morning.
I've been told by some folks that I'm a bit too harsh on the staff which is no doubt true. At the same time we are clearly navigating systems in which there are many non-spoken rules - the very thing that can drive me around-the-bend crazy.
So we're still waiting to find out what the "Rash that Ate Manhattan" actually is and to find out if, in a few days, Tad will be back in his sweet house or still attached to a tube and a bag.
Quoting a conversation with the oncologist two days ago, Tad will be staying in the hospital another two weeks so he can rebuild his immune system and gain strength. This would make it safe for him to be in the outside world without catching any kind of bug or bleed to death from a minor injury.
Then yesterday the infectious disease doc (the person in charge of managing the infections that come up while the oncologist blasts the hell out of his immune system) suggested he may be going home as early as this weekend.
She says that his immune system is rebuilding itself very quickly, unusually quickly.
The ironic part is that Tad presently has what is no doubt the most impressive symptom he's had since the beginning (well maybe second to the shaking shivers): nearly all of his upper body is covered in a splotchy rash that no one can explain and I'm sparing you the details in my description of the rash. It doesn't hurt per se, it doesn't itch, it just bubbles up and spreads.
Two days ago he was able to take a long hot shower, one of the great luxury moments he's allowed every few days. This consists in taking him off all the lovely tubes for about 20 minutes. The staff then wrap the catheter on his arm with a plastic bag, taping it sealed at both ends. Et voila!
After the shower I helped him dry off his back which was free of any rash at all. It was just on his arms, his forehead and his upper chest.
So yesterday I was quite shocked to discover when I lifted his shirt that it had developed across his entire back. I suggested we call the nurse to explain that this was becoming urgent and that perhaps something could be done to stop the spreading while waiting for the results of the biopsy they'd finally taken that morning.
When she arrived she didn't know what to do so we asked her to call the attending doctor and explain that it had doubled in size in less than twenty-four hours. Thrown off balance no doubt by our request and steadfast in her role to play bumper cars between docs and patients, she replied "Rash?, What rash?"
This only maddened Tad (and me). So we began to rummage for the doctor's business card which she had left with a smile and a "Call me anytime" the first time we met.
Apparently she didn't really mean "anytime". I got a human message service asking for a concise message. Who knew those still existed?
The nurse left and called the same doctor from another line. She came back to the room a few minutes later saying that the doctor was sure it was nothing serious and that she'd be in the next morning.
I've been told by some folks that I'm a bit too harsh on the staff which is no doubt true. At the same time we are clearly navigating systems in which there are many non-spoken rules - the very thing that can drive me around-the-bend crazy.
So we're still waiting to find out what the "Rash that Ate Manhattan" actually is and to find out if, in a few days, Tad will be back in his sweet house or still attached to a tube and a bag.
Saturday, May 8, 2010
could be...might be...maybe is...good news
Remission: noun, 1. (medical) the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity; 2. (theology) remission is the forgiveness of sin.
This whole little wrestling match with the dark angel of leukemia has taught us both to live one day at a time avoiding any possible future tripping, either negative or positive. For the last two weeks I've found myself saying to so many people, "You know we'll just have to wait and see. This isn't a time for making plans."
Thus much to my surprise it was with a bit of trepidation that I took in Tad's voicemail this morning: "I've got real good news. Call me back."
I actually heard the message as I was leaving the pool and was pretty sure I knew what he meant. I decided to go out for lunch first.
I played the voice message for my friend John who also immediately knew what it was all about. The day before the oncologist had told us he would probably be getting back the preliminary results of the second biopsy which would tell us if he had indeed blasted the cancerous cells out of the park or not. He also told us nearly three weeks ago that if we got to "remission" Tad would only need to have two more of these five week stints in hospital with chemo. He finished rather ominously by saying, "And if we can't we'll have a discussion to see where we go from there."
John was giggling with excitement: "Wow - that's such good news!! I'm so excited." Still I wasn't willing to go there for some reason.
Two weeks ago I had no logical explanation for why I would burst out in tears one moment and not the next. Why one song made me cry but not another. Why walking down 20th Street near Dolores Park made me cry more than say 14th Street. Why a friend's mention of the Monterrey Aquarium suddenly brought on tearful memories with Tad but not a mention of Greece.
So unpredictable was this whole emotion thing that I actually found myself saying the most surrealistic thing to my friend Ross: "I know that I just told you a whole litany of really tragic things and I have no idea why I did it with such a matter-of-fact voice or why in ten minutes I may start crying again."
(And I'm not the type to hold back tears out of shame or modesty.)
After lunch I called Tad and told him to wait til I got to the hospital so that he could tell me face to face.
When I arrived he said: "Your wish came true" with a funny smile.
I knew he was referring to all those times the first week when we sat in the hospital room holding each other, crying together and me saying, "I really don't want you to die. I hope we get to spend a lot more time together."
So what we now know is that -
1) quantitatively the cancer cells are no longer perceptible in his bone marrow and
2) qualitatively this leukemia is the genetically the easiest kind to knock out.
The difference between 'remission' and 'cure' however is vast and is measured in years. Five years to be exact. If after five years the little bugger hasn't started replicating like crazy and taking over his immune system again then he is considered cured.
As the definition says - remission is the absence of disease activity, not the absence of disease.
Inch allah!
This whole little wrestling match with the dark angel of leukemia has taught us both to live one day at a time avoiding any possible future tripping, either negative or positive. For the last two weeks I've found myself saying to so many people, "You know we'll just have to wait and see. This isn't a time for making plans."
Thus much to my surprise it was with a bit of trepidation that I took in Tad's voicemail this morning: "I've got real good news. Call me back."
I actually heard the message as I was leaving the pool and was pretty sure I knew what he meant. I decided to go out for lunch first.
I played the voice message for my friend John who also immediately knew what it was all about. The day before the oncologist had told us he would probably be getting back the preliminary results of the second biopsy which would tell us if he had indeed blasted the cancerous cells out of the park or not. He also told us nearly three weeks ago that if we got to "remission" Tad would only need to have two more of these five week stints in hospital with chemo. He finished rather ominously by saying, "And if we can't we'll have a discussion to see where we go from there."
John was giggling with excitement: "Wow - that's such good news!! I'm so excited." Still I wasn't willing to go there for some reason.
Two weeks ago I had no logical explanation for why I would burst out in tears one moment and not the next. Why one song made me cry but not another. Why walking down 20th Street near Dolores Park made me cry more than say 14th Street. Why a friend's mention of the Monterrey Aquarium suddenly brought on tearful memories with Tad but not a mention of Greece.
So unpredictable was this whole emotion thing that I actually found myself saying the most surrealistic thing to my friend Ross: "I know that I just told you a whole litany of really tragic things and I have no idea why I did it with such a matter-of-fact voice or why in ten minutes I may start crying again."
(And I'm not the type to hold back tears out of shame or modesty.)
After lunch I called Tad and told him to wait til I got to the hospital so that he could tell me face to face.
When I arrived he said: "Your wish came true" with a funny smile.
I knew he was referring to all those times the first week when we sat in the hospital room holding each other, crying together and me saying, "I really don't want you to die. I hope we get to spend a lot more time together."
So what we now know is that -
1) quantitatively the cancer cells are no longer perceptible in his bone marrow and
2) qualitatively this leukemia is the genetically the easiest kind to knock out.
The difference between 'remission' and 'cure' however is vast and is measured in years. Five years to be exact. If after five years the little bugger hasn't started replicating like crazy and taking over his immune system again then he is considered cured.
As the definition says - remission is the absence of disease activity, not the absence of disease.
Inch allah!
Friday, May 7, 2010
tornadoes passing in the night
A few nights ago I had a dream - an unusual thing these days as I haven't had very deep sleep since the original leukemia diagnosis.
In this dream Tad and I were in a vast house with other people looking through giant picture windows out on the evening sky - not too different from the huge hospital window that looks out over the Golden Gate where we watch the orange sunsets every night.
In the dream we were looking at a huge storm brewing above a nearby city and suddenly I saw tornado clouds descending towards the earth, clouds I hadn't seen since my childhood in Michigan.
I warned everyone at the party these were tornadoes forming and we all needed to go under tables to protect ourselves. Miraculously the killer winds kept going past us but unlike in real life no windows burst, no objects went flying, no roof was ripped off. They just passed us by.
That was the end of the dream.
Yesterday after a rather long unwanted rant about how he felt trapped in jury duty the day before and how the judge was vindictive and how he almost didn't get out, our oncologist shared with us a bunch of incomprehensible geeky genetic information which he presented as "very good news." I could see from his excitement once again that all this scientific stuff really turned him on but I could tell from Tad's face that he too had misunderstood.
"So what does this mean in laymen's terms?," he asked.
"Basically it means that the genetic make up of your leukemia has the most positive prognosis."
That same day the infectious disease MD Dr Shelly Gordon, the feisty, brilliant kind of older woman you really want to have on your team, told Tad that he was actually overcoming his various infections quite quickly for someone who's immune system had been shot to hell by a constant flow of toxic chemicals for seven straight days (she didn't exactly say all that).
Indeed the diarrhea, fevers, shakes, and loss of appetite all seemed to have past. Right now he's dealing with a painful mouth and throat infection that they say is no doubt caused by antibiotics themselves (one of those fun fungal infections).
So though we are both showing all the symptoms of two people afraid to jump to any positive conclusions - we're both pretty happy that for now the tornadoes seemed to have past and we're both intact except for a few scratches here and there.
(Within the next 48 hours we should know from yesterday's biopsy if this first round of chemo actually kicked the cancer into remission or not - this information will have a big impact on what the next few months look like including the likelihood of whether Tad will be around to see the new Bay Bridge).
In this dream Tad and I were in a vast house with other people looking through giant picture windows out on the evening sky - not too different from the huge hospital window that looks out over the Golden Gate where we watch the orange sunsets every night.
In the dream we were looking at a huge storm brewing above a nearby city and suddenly I saw tornado clouds descending towards the earth, clouds I hadn't seen since my childhood in Michigan.
I warned everyone at the party these were tornadoes forming and we all needed to go under tables to protect ourselves. Miraculously the killer winds kept going past us but unlike in real life no windows burst, no objects went flying, no roof was ripped off. They just passed us by.
That was the end of the dream.
Yesterday after a rather long unwanted rant about how he felt trapped in jury duty the day before and how the judge was vindictive and how he almost didn't get out, our oncologist shared with us a bunch of incomprehensible geeky genetic information which he presented as "very good news." I could see from his excitement once again that all this scientific stuff really turned him on but I could tell from Tad's face that he too had misunderstood.
"So what does this mean in laymen's terms?," he asked.
"Basically it means that the genetic make up of your leukemia has the most positive prognosis."
That same day the infectious disease MD Dr Shelly Gordon, the feisty, brilliant kind of older woman you really want to have on your team, told Tad that he was actually overcoming his various infections quite quickly for someone who's immune system had been shot to hell by a constant flow of toxic chemicals for seven straight days (she didn't exactly say all that).
Indeed the diarrhea, fevers, shakes, and loss of appetite all seemed to have past. Right now he's dealing with a painful mouth and throat infection that they say is no doubt caused by antibiotics themselves (one of those fun fungal infections).
So though we are both showing all the symptoms of two people afraid to jump to any positive conclusions - we're both pretty happy that for now the tornadoes seemed to have past and we're both intact except for a few scratches here and there.
(Within the next 48 hours we should know from yesterday's biopsy if this first round of chemo actually kicked the cancer into remission or not - this information will have a big impact on what the next few months look like including the likelihood of whether Tad will be around to see the new Bay Bridge).
Wednesday, May 5, 2010
the bottom of the bell curve
So medically this is the lowest point of the chemotherapy process.
This is the moment when all of Tad's immune system has been whacked out and he is vulnerable to just about anything.
It's true he is on three different intravenous antibiotics and an anti-fungal to help keep icky things at bay.
Ironically our emotions seem to be on the opposite end of the spectrum. The toughest moments were in the beginning when we first got the news, were being told to prepare for this or that ugly scenario and really felt powerless over the entire process.
When your immune system is being eaten by fast-dividing cancerous cells nobody stops to ask you if you want a man or woman doctor, if you want this hospital or that, if you want to talk about the different chemotherapy contents and the havoc they will wreak on your body. They just get you to the closest bed and the closest IV stand.
Even though Tad has been going through painful bouts of severe diarrhea and more fevers (without the shakes this time) we both feel more calm.
I'm not allowing myself to write the word 'optimistic' - but there is an element of hope.
Yesterday we spent some gentle time together just talking and cuddling. He finally let me take out the buzz-shaver and cut his hair --back to the military 'do he once had in the Navy-- in anticipation of the promised hair loss. For some reason I find inexplicable pleasure in doing this so I was delighted. While he had his back turned I bent down and slipped a swath of the curly brown hair into a rubber glove hid away in my pocket.
One of the nurses who's felt like a true ally from the beginning and has always kept an appropriate professional distance came in for the hundredth time and this time said almost in a whisper, "You two have what I have always dreamed of having in my life but could never find."
It was an uncomfortable path to feeling good about the deep love that binds us and is visible to others. This feeling is not unlike the one I have been experiencing each time I go to see the neighbor in the next room: an older gentleman, recently moved to the Bay Area, who was diagnosed with the same unusual form of leukemia. He is actually two days behind Tad in his treatment but I can tell from my visits that the whole process is taking much more of a toll on him. He is not as young, not as resilient perhaps. I walk away from his room both really sad to see how huge his struggle is yet optimistic because he shows me that things could be much worse for Tad.
(Now that I think about it - I don't remember ever having had this feeling of seeing someone's suffering as a conscious message about how good things are in my own life. I'm aware that many people do. I imagine unconsciously the fact that I'm usually healthier permeates the relationships I may have with folks who struggle.)
Yesterday I was broken-hearted to discover that our neighbor was actually moved to another room because he fell for the second time. It seems the chemo has caused dizziness and instability in him.
The next few days may actually take us back to the sorrow and tears. The doctor will be both delivering the news of the first bone marrow biopsy which happened two weeks ago yesterday AND share with us the initial results of the chemo from another biopsy he hopes to do today or tomorrow.
In the meantime I am simply being with what we have before us - not allowing my oh-so-fertile imagination to begin writing the rest of the story before it happens.
As I write these words the morning sun streams into my apartment hitting a bouquet of bright yellow tulips just so. For now it's sunny.
This is the moment when all of Tad's immune system has been whacked out and he is vulnerable to just about anything.
It's true he is on three different intravenous antibiotics and an anti-fungal to help keep icky things at bay.
Ironically our emotions seem to be on the opposite end of the spectrum. The toughest moments were in the beginning when we first got the news, were being told to prepare for this or that ugly scenario and really felt powerless over the entire process.
When your immune system is being eaten by fast-dividing cancerous cells nobody stops to ask you if you want a man or woman doctor, if you want this hospital or that, if you want to talk about the different chemotherapy contents and the havoc they will wreak on your body. They just get you to the closest bed and the closest IV stand.
Even though Tad has been going through painful bouts of severe diarrhea and more fevers (without the shakes this time) we both feel more calm.
I'm not allowing myself to write the word 'optimistic' - but there is an element of hope.
Yesterday we spent some gentle time together just talking and cuddling. He finally let me take out the buzz-shaver and cut his hair --back to the military 'do he once had in the Navy-- in anticipation of the promised hair loss. For some reason I find inexplicable pleasure in doing this so I was delighted. While he had his back turned I bent down and slipped a swath of the curly brown hair into a rubber glove hid away in my pocket.
One of the nurses who's felt like a true ally from the beginning and has always kept an appropriate professional distance came in for the hundredth time and this time said almost in a whisper, "You two have what I have always dreamed of having in my life but could never find."
It was an uncomfortable path to feeling good about the deep love that binds us and is visible to others. This feeling is not unlike the one I have been experiencing each time I go to see the neighbor in the next room: an older gentleman, recently moved to the Bay Area, who was diagnosed with the same unusual form of leukemia. He is actually two days behind Tad in his treatment but I can tell from my visits that the whole process is taking much more of a toll on him. He is not as young, not as resilient perhaps. I walk away from his room both really sad to see how huge his struggle is yet optimistic because he shows me that things could be much worse for Tad.
(Now that I think about it - I don't remember ever having had this feeling of seeing someone's suffering as a conscious message about how good things are in my own life. I'm aware that many people do. I imagine unconsciously the fact that I'm usually healthier permeates the relationships I may have with folks who struggle.)
Yesterday I was broken-hearted to discover that our neighbor was actually moved to another room because he fell for the second time. It seems the chemo has caused dizziness and instability in him.
The next few days may actually take us back to the sorrow and tears. The doctor will be both delivering the news of the first bone marrow biopsy which happened two weeks ago yesterday AND share with us the initial results of the chemo from another biopsy he hopes to do today or tomorrow.
In the meantime I am simply being with what we have before us - not allowing my oh-so-fertile imagination to begin writing the rest of the story before it happens.
As I write these words the morning sun streams into my apartment hitting a bouquet of bright yellow tulips just so. For now it's sunny.
Sunday, May 2, 2010
living ontologically
A few weeks ago the most surprising thing happened: I woke up at 5 AM urinating in my sleep.
It probably goes without saying that this hadn't happened to me in a very long time; a sort of wake up call from the ethers. I made coffee and retreated to my living room to write down my very vivid dream. Cocktail party, shakers and movers, seduction, furtive glances, playful bon-mots; in essence it was reminiscent of my life in my 20's in Paris: .
For some reason while writing I found myself called to reach for Victor Frankl's "Man's Search for Meaning" which I opened randomly and began to read. The section was about living a "provisional life", one which is a sort of painful parenthesis on real life, a parenthesis with little meaning or goal. Frankl developed this notion by watching fellow prisoners in the concentration camps and their difficulty dealing with not knowing when their imprisonment would end. Heidegger I believe wrote about a very different way of being: ontological living i.e. living fully in the moment as if we may die the next.
As I was writing all this even though I was quite happy with my life I remember wishing I were living more ontologically, with more honesty and boldness, less hesitancy. I actually found myself going to fond memories of my own health struggles in the early 90's during which learned men in white coats assured me with absolute certainty that I would be dead before my 40th birthday. At that time I remember being so frank, so blatant, so present to my own life and the bigger Life.
Alas what my delusional mind had conveniently managed to omit from this memory were the many long moments of abject sorrow, long nights of crying myself to sleep from fear of pain and the unknown and the difficult awareness (both reassuring and frightening) of being absolutely alone in the face of certain choices concerning my health and my body.
Last night in the hospital with Tad through blurred vision I slowly came out of my slumber to hear my beloved struggling through terrible chills and with each deep breath uttering, "Oh my god; oh my god". Such was the pain of breathing in that state of what the nurses call "rigors".
He was freezing as he has been several times in the last three days and needed blankets. The nurse at his side on the other hand had one single goal in mind: get a proper reading of his blood pressure, a task which evaded her again and again for some reason.
I suppressed my urge to insult her and bark commands at her and instead got out of my foldaway bed, walked around her and began to cover him with layers of blankets. When I was done I lie down next to him pressing my warm body against his and wrapping my arms around his chest from behind. I held his shaking body in mine and whispered soothing words in his ear while she walked out the door. Though I believe it felt good for him to feel me there I actually can't be certain.
One thing I am absolutely certain of however is that only he could feel the pain. As much as I yearned for it to go away, as much as I wanted my own suffering (caused by seeing him suffer) to go away, I knew that in reality there was nothing I could do but be a witness to his pain.
This reality continues to be unbearable. I am a do-er, a person who does, a compulsive. I find solace in doing, undoing and redoing.
I would like to believe the many staff people working around him are doing everything they absolutely can to keep him healthy and help him survive this cancer. But the part of me that wants to do, the part of me that can't bear just sitting and watching, finds fault with them, wants to yell at them: Make it go away!! Don't just stand there - Make it go away!!
Today I'm living ontologically in a way I could never have imagined. There are incredible moments of bliss such as when we joke, look into each others' eyes, cry together or even this afternoon as I swam my laps in the gym slowly counting each breath in a way that felt so much more alive than two weeks ago. But then there are incredible moments of pain and learning to let go.
"God grant me the serenity..."
It probably goes without saying that this hadn't happened to me in a very long time; a sort of wake up call from the ethers. I made coffee and retreated to my living room to write down my very vivid dream. Cocktail party, shakers and movers, seduction, furtive glances, playful bon-mots; in essence it was reminiscent of my life in my 20's in Paris: .
For some reason while writing I found myself called to reach for Victor Frankl's "Man's Search for Meaning" which I opened randomly and began to read. The section was about living a "provisional life", one which is a sort of painful parenthesis on real life, a parenthesis with little meaning or goal. Frankl developed this notion by watching fellow prisoners in the concentration camps and their difficulty dealing with not knowing when their imprisonment would end. Heidegger I believe wrote about a very different way of being: ontological living i.e. living fully in the moment as if we may die the next.
As I was writing all this even though I was quite happy with my life I remember wishing I were living more ontologically, with more honesty and boldness, less hesitancy. I actually found myself going to fond memories of my own health struggles in the early 90's during which learned men in white coats assured me with absolute certainty that I would be dead before my 40th birthday. At that time I remember being so frank, so blatant, so present to my own life and the bigger Life.
Alas what my delusional mind had conveniently managed to omit from this memory were the many long moments of abject sorrow, long nights of crying myself to sleep from fear of pain and the unknown and the difficult awareness (both reassuring and frightening) of being absolutely alone in the face of certain choices concerning my health and my body.
Last night in the hospital with Tad through blurred vision I slowly came out of my slumber to hear my beloved struggling through terrible chills and with each deep breath uttering, "Oh my god; oh my god". Such was the pain of breathing in that state of what the nurses call "rigors".
He was freezing as he has been several times in the last three days and needed blankets. The nurse at his side on the other hand had one single goal in mind: get a proper reading of his blood pressure, a task which evaded her again and again for some reason.
I suppressed my urge to insult her and bark commands at her and instead got out of my foldaway bed, walked around her and began to cover him with layers of blankets. When I was done I lie down next to him pressing my warm body against his and wrapping my arms around his chest from behind. I held his shaking body in mine and whispered soothing words in his ear while she walked out the door. Though I believe it felt good for him to feel me there I actually can't be certain.
One thing I am absolutely certain of however is that only he could feel the pain. As much as I yearned for it to go away, as much as I wanted my own suffering (caused by seeing him suffer) to go away, I knew that in reality there was nothing I could do but be a witness to his pain.
This reality continues to be unbearable. I am a do-er, a person who does, a compulsive. I find solace in doing, undoing and redoing.
I would like to believe the many staff people working around him are doing everything they absolutely can to keep him healthy and help him survive this cancer. But the part of me that wants to do, the part of me that can't bear just sitting and watching, finds fault with them, wants to yell at them: Make it go away!! Don't just stand there - Make it go away!!
Today I'm living ontologically in a way I could never have imagined. There are incredible moments of bliss such as when we joke, look into each others' eyes, cry together or even this afternoon as I swam my laps in the gym slowly counting each breath in a way that felt so much more alive than two weeks ago. But then there are incredible moments of pain and learning to let go.
"God grant me the serenity..."
Friday, April 30, 2010
slice of heaven
Yesterday was the last of a seven day run of being attached to a bag of chemotherapy. Now we wait while the little buggers continue to destroy Tad's immune system...and the cancerous cells that are colonizing it.
They keep telling us this may result in painful mouth sores, nausea, spikes of fevers, opportunistic infections, loss of all hair - among other things.
Tad's appetite is definitely waning particularly at night when even the smell of my Trader Joe reheated meals seems to bring him a wave of ick.
But one of the highlights of not having to have a tube with chemo pumping into his heart was that he actually got one hour of freedom from the towering IV rolly-thing allowing us just enough time to take a short walk yesterday.
Tad wanted to go to a coffee shop (namely Peets) but the nurse warned that the two block walk was too far away. She insisted we stay close to the hospital. It was a glorious sunny day in Pacific Heights so we walked along the hospital's edge taking in the lavender, ginger stalks, broom and callas.
With the warm sun pushing us along we decided to slowly wander a demi-block up Sacramento to Lafayette Square past porticos, mansions and sculpted shrubs. For a few minutes we sat on the edge of the park and Tad was actually able to touch grass for the first time in 12 days. People were lying out sunbathing higher up in the park despite the bracing cold Pacific breeze.
I was much more acutely aware of all the sensual pleasures of being outdoors than I am when I leave this place daily. I was vicariously living this reconnection with the non-hospital world. It was no doubt the fact that I was doing it with Tad that made the smell of lavender and rosemary stronger, the colors a bit brighter, the clouds a bit more puffy. Though I hold on to a fantasy of that first day when in a month we step back into his yard, see all the flowers that have appeared since the last visit, admire the burgeoning vegetable blossoms, I am also painfully aware that I might leave this place with an urn of ashes. I don't let myself feel that pain much anymore.
All we have is this moment.
We made our way back down to the hospital and once inside popped into the lobby cafe where little white haired ladies with shockingly red lipstick volunteer as part of the hospitals "guild" to serve simple fare to anyone who'll stop by, apparently as an ongoing fundraiser for the institution. Tad sipped a cup of coffee by lifting the face mask and I ate my first grilled cheese sandwich since childhood.
It seems funny to me that this 19th century tradition of "guilds" still exists in the corporate, big-stakes world of modern medicine. I just checked the hospital's Web site and noticed that last year this "non-profit" had a turnover of several billion dollars and a profit of some $500 million. If they'd distributed last year's profits among all the volunteers each one would have made $100,000.
When we got back to the room June the perky 40-something white nurse who always talks a couple decibels above social norms asked us where we'd been. When I told her "the park" she laughed and called me a joker. Then her face changed when she realized I wasn't joking. "Oh my god! Don't ever leave the hospital premises again!! He looks strong on the outside but on the inside he is totally compromised."
She joked about it again this morning when she woke us for breakfast with a slightly stern smile, "Maybe you're so tired because of that crazy walk you took." Then she broke into a long list of all the things that could have gone wrong.
Apparently our twenty minutes of blissful freedom were a serious risk. To me they simply felt like a slice of heaven stolen in the midst of this struggle.
This morning is all about trying to manage Tad's chills, fever and body aches and hopefully finding the organism that's causing them.
Such a small slice...
They keep telling us this may result in painful mouth sores, nausea, spikes of fevers, opportunistic infections, loss of all hair - among other things.
Tad's appetite is definitely waning particularly at night when even the smell of my Trader Joe reheated meals seems to bring him a wave of ick.
But one of the highlights of not having to have a tube with chemo pumping into his heart was that he actually got one hour of freedom from the towering IV rolly-thing allowing us just enough time to take a short walk yesterday.
Tad wanted to go to a coffee shop (namely Peets) but the nurse warned that the two block walk was too far away. She insisted we stay close to the hospital. It was a glorious sunny day in Pacific Heights so we walked along the hospital's edge taking in the lavender, ginger stalks, broom and callas.
With the warm sun pushing us along we decided to slowly wander a demi-block up Sacramento to Lafayette Square past porticos, mansions and sculpted shrubs. For a few minutes we sat on the edge of the park and Tad was actually able to touch grass for the first time in 12 days. People were lying out sunbathing higher up in the park despite the bracing cold Pacific breeze.
I was much more acutely aware of all the sensual pleasures of being outdoors than I am when I leave this place daily. I was vicariously living this reconnection with the non-hospital world. It was no doubt the fact that I was doing it with Tad that made the smell of lavender and rosemary stronger, the colors a bit brighter, the clouds a bit more puffy. Though I hold on to a fantasy of that first day when in a month we step back into his yard, see all the flowers that have appeared since the last visit, admire the burgeoning vegetable blossoms, I am also painfully aware that I might leave this place with an urn of ashes. I don't let myself feel that pain much anymore.
All we have is this moment.
We made our way back down to the hospital and once inside popped into the lobby cafe where little white haired ladies with shockingly red lipstick volunteer as part of the hospitals "guild" to serve simple fare to anyone who'll stop by, apparently as an ongoing fundraiser for the institution. Tad sipped a cup of coffee by lifting the face mask and I ate my first grilled cheese sandwich since childhood.
It seems funny to me that this 19th century tradition of "guilds" still exists in the corporate, big-stakes world of modern medicine. I just checked the hospital's Web site and noticed that last year this "non-profit" had a turnover of several billion dollars and a profit of some $500 million. If they'd distributed last year's profits among all the volunteers each one would have made $100,000.
When we got back to the room June the perky 40-something white nurse who always talks a couple decibels above social norms asked us where we'd been. When I told her "the park" she laughed and called me a joker. Then her face changed when she realized I wasn't joking. "Oh my god! Don't ever leave the hospital premises again!! He looks strong on the outside but on the inside he is totally compromised."
She joked about it again this morning when she woke us for breakfast with a slightly stern smile, "Maybe you're so tired because of that crazy walk you took." Then she broke into a long list of all the things that could have gone wrong.
Apparently our twenty minutes of blissful freedom were a serious risk. To me they simply felt like a slice of heaven stolen in the midst of this struggle.
This morning is all about trying to manage Tad's chills, fever and body aches and hopefully finding the organism that's causing them.
Such a small slice...
Wednesday, April 28, 2010
Day 10: a walk and a talk
Yesterday was the best day and the worst day since this all began ten days ago.
Tad stripped down and I gave him a sponge bath standing up in his hospital room with the million dollar view of the Golden Gate Bridge and the Headlands. Hints of Little House on the Prairie surrounded by 21st century devices. Though he did get chilled since we were missing the potbelly stove to keep him warm.
He put on his favorite Santa Cruz shorts and a big sleeveless t-shirt, threw on a jacket and a face mask to keep out any bugs and we actually walked downstairs together for the first time (with the help of an elevator). Then we went outside! Walked right through the big sliding glass doors IV's wheeling behind us like a thoroughbred dog. An astute observer would have noticed the orange sticker on the drip with big black letters: CHEMO.
Despite the mask on his face Tad was able to feel the fresh Pacific breeze on his skin and take in the plants and bushes in the hospital gardens. It tired him out but he began stretching and moving his body to get the 10 days of bed kinks out of his muscles. It was glorious to see him swiveling his hips this way and that, raising his arms to the sky, loosening up his 43 yr old body all full of toxic liquids with strange chemical names that sound like unexplored foreign territories.
It was this same day that we had the "Here's what to do if I die..." Talk.
I had left a voice mail with Matt the social worker pleading with him to help me find the words to bring up this subject. I simply didn't have it in me. I think another part of our magical thinking is that if we don't talk about the post-humous plans then we can keep death at a distance. Matt called me back a few hours later telling me he had been with Tad discussing that very thing when I called.
A few minutes after my arrival, as I sat on the bed caressing his gentle face (post-hand sanitizer of course) Tad said to me: "I want to be cremated and I want my ashes to be put next to my mom's".
The idea that this beaming, loving man will one day be a box of ashes is unbearable to me. Six years after my grandma's death I still find myself yearning to feel the touch of her loving hand on my face, her grey-blue gaze looking deeply into mine. How do we find the strength to live without these things once we've tasted their deliciousness? How will I find the strength if he does die?
The thought of it reduced us both to silent sobs.
About six months into our relationship we went for a two day wilderness hike in a remote coastal area called King's Cove. It was a tough, exhilarating hike along coastal trails then up over the ridge and back down through forests and meadows. The next day to get out we drove along the coast and then up over rolling coastal hills sprinkled with cows and farms. We didn't talk for hours we were so full of nature. It occurred to me that that was unusual for me. I had always had boyfriends as chatty as me. I commented on it and he replied, "Yes sometimes I just need silence."
And that has been a key element in our couple. Where I would like sloppy, jump-up-and-down, puppy dog greetings I often get subtle glances, sweet smiles and after a time a long slow hug with a "Welcome home my love" whispered in my ear. It was disarming at first. Now I find it soothing.
So here we are talking about the logistical details of life after Tad, or at least life after Tad's body is done. And it is mostly painful silence, long sobs and gentle touch.
Tad stripped down and I gave him a sponge bath standing up in his hospital room with the million dollar view of the Golden Gate Bridge and the Headlands. Hints of Little House on the Prairie surrounded by 21st century devices. Though he did get chilled since we were missing the potbelly stove to keep him warm.
He put on his favorite Santa Cruz shorts and a big sleeveless t-shirt, threw on a jacket and a face mask to keep out any bugs and we actually walked downstairs together for the first time (with the help of an elevator). Then we went outside! Walked right through the big sliding glass doors IV's wheeling behind us like a thoroughbred dog. An astute observer would have noticed the orange sticker on the drip with big black letters: CHEMO.
Despite the mask on his face Tad was able to feel the fresh Pacific breeze on his skin and take in the plants and bushes in the hospital gardens. It tired him out but he began stretching and moving his body to get the 10 days of bed kinks out of his muscles. It was glorious to see him swiveling his hips this way and that, raising his arms to the sky, loosening up his 43 yr old body all full of toxic liquids with strange chemical names that sound like unexplored foreign territories.
It was this same day that we had the "Here's what to do if I die..." Talk.
I had left a voice mail with Matt the social worker pleading with him to help me find the words to bring up this subject. I simply didn't have it in me. I think another part of our magical thinking is that if we don't talk about the post-humous plans then we can keep death at a distance. Matt called me back a few hours later telling me he had been with Tad discussing that very thing when I called.
A few minutes after my arrival, as I sat on the bed caressing his gentle face (post-hand sanitizer of course) Tad said to me: "I want to be cremated and I want my ashes to be put next to my mom's".
The idea that this beaming, loving man will one day be a box of ashes is unbearable to me. Six years after my grandma's death I still find myself yearning to feel the touch of her loving hand on my face, her grey-blue gaze looking deeply into mine. How do we find the strength to live without these things once we've tasted their deliciousness? How will I find the strength if he does die?
The thought of it reduced us both to silent sobs.
About six months into our relationship we went for a two day wilderness hike in a remote coastal area called King's Cove. It was a tough, exhilarating hike along coastal trails then up over the ridge and back down through forests and meadows. The next day to get out we drove along the coast and then up over rolling coastal hills sprinkled with cows and farms. We didn't talk for hours we were so full of nature. It occurred to me that that was unusual for me. I had always had boyfriends as chatty as me. I commented on it and he replied, "Yes sometimes I just need silence."
And that has been a key element in our couple. Where I would like sloppy, jump-up-and-down, puppy dog greetings I often get subtle glances, sweet smiles and after a time a long slow hug with a "Welcome home my love" whispered in my ear. It was disarming at first. Now I find it soothing.
So here we are talking about the logistical details of life after Tad, or at least life after Tad's body is done. And it is mostly painful silence, long sobs and gentle touch.
Monday, April 26, 2010
is that a rope or a snake?
My spiritual practice teaches me to live one day at a time, one moment at a time, one breath at a time.
This has been an incredible gift for me, a man who has always lived his life tilted forward in movement.
It is particularly difficult when I am planning something for the future. How do I stay present while organizing that fabulous trip to Greece and Switzerland? How do I remain grounded while developing a professional project with budgets, timelines and deadlines? It's a hard balance to find: between projecting into the future then coming back to the present as honestly as possible.
But this gets worse when I'm projecting scary things into the future.
According to some studies this is what we do all the time with mini-thoughts and emotions. I hear something (usually about change) and I immediately without knowing it wonder about how that thing affects me, others and the future, even if it's only for a flash of a second.
So when the man you love is connected to two plastic tubes injecting noxious chemicals into his body it's not surprising that I project into a scary future. Not exactly a trip to Switzerland.
I've gone way beyond future-tripping over the scariness of the word "cancer". That was three lives ago AKA last Saturday.
Now I grapple with the scariness of chemo and leukemia. The documents we've been given tell us he will get mouth sores, nausea, lose his hair, fevers, opportunistic infections.
Thus every time I touch his beautiful face and it feels a little warm, I leave the present moment. Everytime he complains of an ache I wonder if this is the beginning of the end.
In a way if I'm just in my fear and projecting into some fantasized future that's not real, then I am already creating a distance from him, from myself and from reality. Maybe that's the pay-off: scary future-tripping allows me to not feel the unbearable pain of reality.
And then there are the mental excursions my imagination and I go on almost voluntarily, the what-ifs.
What if he..
Dies?
Gets really sick?
Can't pay his bills?
Doesn't say good bye to his dad?
goes into a coma?
What if other people....
don't get the opportunity to say good bye?
to spend precious time with him like I have?
don't get to hold his hand?
What if I...
Am not strong enough?
Can't stay present and lose myself in fear?
Can't get back to my own life?
Lose him for good?
I am aware that these mental machinations are only sources of pain.
Yet studies show that people who read the "in case of emergency" placards in airplanes are actually better equipped to handle an accident.
How do I find that safe place between preparing somehow (but for what?) and staying present?
How do I handle my panic for instance when I call and can't get through and I imagine the worst?
How do I live in "Now"?
This has been an incredible gift for me, a man who has always lived his life tilted forward in movement.
It is particularly difficult when I am planning something for the future. How do I stay present while organizing that fabulous trip to Greece and Switzerland? How do I remain grounded while developing a professional project with budgets, timelines and deadlines? It's a hard balance to find: between projecting into the future then coming back to the present as honestly as possible.
But this gets worse when I'm projecting scary things into the future.
According to some studies this is what we do all the time with mini-thoughts and emotions. I hear something (usually about change) and I immediately without knowing it wonder about how that thing affects me, others and the future, even if it's only for a flash of a second.
So when the man you love is connected to two plastic tubes injecting noxious chemicals into his body it's not surprising that I project into a scary future. Not exactly a trip to Switzerland.
I've gone way beyond future-tripping over the scariness of the word "cancer". That was three lives ago AKA last Saturday.
Now I grapple with the scariness of chemo and leukemia. The documents we've been given tell us he will get mouth sores, nausea, lose his hair, fevers, opportunistic infections.
Thus every time I touch his beautiful face and it feels a little warm, I leave the present moment. Everytime he complains of an ache I wonder if this is the beginning of the end.
In a way if I'm just in my fear and projecting into some fantasized future that's not real, then I am already creating a distance from him, from myself and from reality. Maybe that's the pay-off: scary future-tripping allows me to not feel the unbearable pain of reality.
And then there are the mental excursions my imagination and I go on almost voluntarily, the what-ifs.
What if he..
Dies?
Gets really sick?
Can't pay his bills?
Doesn't say good bye to his dad?
goes into a coma?
What if other people....
don't get the opportunity to say good bye?
to spend precious time with him like I have?
don't get to hold his hand?
What if I...
Am not strong enough?
Can't stay present and lose myself in fear?
Can't get back to my own life?
Lose him for good?
I am aware that these mental machinations are only sources of pain.
Yet studies show that people who read the "in case of emergency" placards in airplanes are actually better equipped to handle an accident.
How do I find that safe place between preparing somehow (but for what?) and staying present?
How do I handle my panic for instance when I call and can't get through and I imagine the worst?
How do I live in "Now"?
Friday, April 23, 2010
reactions
People react in unexpected ways when you tell them you're partner may die soon.
I was amazed that some people to whom I feel REALLY close suddenly stopped calling. Some family members have reacted with the usual reassuring words but no sense of any kind of compassion or real heartfelt emotion.
Yesterday at the vegetable plot a woman I barely knew came up to say hello and asked about Tad. When I told her what had happened I began to weep uncontrollably. This short ex-school teacher with torpedo breasts just took me in her arms and held me while I cried.
Then she asked who would be taking care of the garden. When I told her that I wouldn't be making it there for at least a month given the chemo regimen, she assured me she'd talk to other neighbors and organize a gardening team to keep our garden weedless and watered.
I pointed out that the irrigation system was broke and they'd have to water by hand. She replied, "Oh show me which part and I'll get it fixed for you."
Maybe it's easier for strangers to be more loving and forthcoming. Maybe family members are just too damned close to be able to respond that way - I imagine they are going through what we went through about 4 days ago: shock and disbelief, mixed with anger and refusal.
One of my neighbors was clearly still at a stage which Tad and I had both gone through a few days ago. Let's call it the I-bet-I-can-find-a-hole-in-your-diagnosis Stage. Based on an old email she sat me down and tried to convince me that the pneumonia diagnosis was probably caused by a specious lung fungus she'd heard about on NPR that is floating around and is mostly escaping the watchful eye of medical doctors. I had to stop her mid-theory and tell her that she had missed a couple of trains and I had all the info necessary to debunk her idea.
Funny how we get so attached to these other ideas. The second night I stopped the oncologist dead in his tracks and confronted with all my reasons why I thought this was a lymphoma and not a leukemia -- all purely based on Google blitzkriegs (lymphomas are easier to treat and cure than leukemia). He listened carefully then responded that maybe I was right but that if it was a lymphoma it was a very aggressive one. I finished by saying, "And maybe this is just the part of me that wants to refuse this reality."
He was kind enough to just smile.
So here I sit in a hospital room with a million dollar view of the Golden Gate Bridge in awe of how life can change so quickly. I haven't cried once today whereas yesterday I couldn't stop. I went from sobbing non-stop over the fact that the love of my life may not be alive in a month to a sort of deep serenity today: this is what we are going through and any future tripping is a vain endeavor that can only lead to pain.
Breathing in the mystery of it all.
I was amazed that some people to whom I feel REALLY close suddenly stopped calling. Some family members have reacted with the usual reassuring words but no sense of any kind of compassion or real heartfelt emotion.
Yesterday at the vegetable plot a woman I barely knew came up to say hello and asked about Tad. When I told her what had happened I began to weep uncontrollably. This short ex-school teacher with torpedo breasts just took me in her arms and held me while I cried.
Then she asked who would be taking care of the garden. When I told her that I wouldn't be making it there for at least a month given the chemo regimen, she assured me she'd talk to other neighbors and organize a gardening team to keep our garden weedless and watered.
I pointed out that the irrigation system was broke and they'd have to water by hand. She replied, "Oh show me which part and I'll get it fixed for you."
Maybe it's easier for strangers to be more loving and forthcoming. Maybe family members are just too damned close to be able to respond that way - I imagine they are going through what we went through about 4 days ago: shock and disbelief, mixed with anger and refusal.
One of my neighbors was clearly still at a stage which Tad and I had both gone through a few days ago. Let's call it the I-bet-I-can-find-a-hole-in-your-diagnosis Stage. Based on an old email she sat me down and tried to convince me that the pneumonia diagnosis was probably caused by a specious lung fungus she'd heard about on NPR that is floating around and is mostly escaping the watchful eye of medical doctors. I had to stop her mid-theory and tell her that she had missed a couple of trains and I had all the info necessary to debunk her idea.
Funny how we get so attached to these other ideas. The second night I stopped the oncologist dead in his tracks and confronted with all my reasons why I thought this was a lymphoma and not a leukemia -- all purely based on Google blitzkriegs (lymphomas are easier to treat and cure than leukemia). He listened carefully then responded that maybe I was right but that if it was a lymphoma it was a very aggressive one. I finished by saying, "And maybe this is just the part of me that wants to refuse this reality."
He was kind enough to just smile.
So here I sit in a hospital room with a million dollar view of the Golden Gate Bridge in awe of how life can change so quickly. I haven't cried once today whereas yesterday I couldn't stop. I went from sobbing non-stop over the fact that the love of my life may not be alive in a month to a sort of deep serenity today: this is what we are going through and any future tripping is a vain endeavor that can only lead to pain.
Breathing in the mystery of it all.
Thursday, April 22, 2010
keys on the table
Today I took Tad's car down to Santa Cruz. I wasn't comfortable having to change two cars around every time the crazy city of San Francisco comes through to sweep the streets, a policy I can only imagine as a cash cow for the deficit-laden burg.
I also took his car down because I could no longer stand the pain of seeing his keys on the table in my living room even though he wasn't in my house.
When Tad is in my house, those three and a half days every two weeks that we call "shared custody of our couple" I see them looking up at me.
When he's there the fridge is full of good stuff I've gone out to buy at Trader Joe's with this incredibly maternal delight: I walk through the store literally asking myself over and over again, "what would he really like this time"?
When he's there I have a bouquet of cut flowers on the table in the living room right next to where he puts his laptop.
When he's there I am less of a busy-body, feel less the need to go out and be with people, to chat on the phone, to run around.
When he's there I read more. I breathe more slowly. I smile more.
I guess it's no surprise that I usually stop crying when I'm in that hospital room next to him. The fear that he might be dead in a few weeks dissipates. The tugging anxious feeling I get when I am out in the world goes away.
I spend entire days (and some nights) here not just because it takes a lot of work to put your life on hold for 5 weeks. Though I am here for that: for helping him with the paper work, the phone calls, the contacting family and friends, the finding someone to look after the cat. But I'm mostly here because I'm afraid that once they've blasted the hell out of his immune system with these chemicals that he just might not survive. Being in the same room with him - as much as possible - is my way of overcoming that fear.
Of course it makes no sense. I'm not going to get into a wrestling match with the grim reaper should he (or she) come by. If I give it more than a moment of thought I see that my being there doesn't keep death away even if I like to imagine that having a loved one close by somehow prolongs life through some kind of love-based immune stimulation.
No. My thinking is purely mathematical. If he is going to die I want to be with him as much as I can before he croaks. So if he is going to die soon a possibility our oncologist puts at 50% then I want to get as many minutes in now as possible. I am happy to spend more time away from him to balance this out in, say, ten years.
This is not a new feeling for me. Ever since the AIDS epidemic tore through my circle of friends like a weed whacker taking out the tall plants I have been far less patient. When I get stuck in traffic I sputter and spout because I feel like somehow someone is wasting MY time. The notion that hundreds of people are stuck in the same traffic jam and all just as unhappy means little to this part of my brain.
Life is short. I'm stuck. And I don't want to spend my precious hours this way. It is seriously near the top of my list of reasons why I don't do nine to fives.
We are getting ready for bed. Tad has just had his first shower in hospital since arriving here quite unexpectedly four days ago. (For the background info: he woke me up with pains that I figured were due to his strained work out the day before. He insisted the pain was more intense than work-out pains. I took him to ER where they said he had a mild version of pneumonia. I left for the day and said I'd meet him at my house that evening, only to find him still hospitalized and receiving a fresh batch of platelets - for some reason he had next to none. A whirlwind later - we landed in oncology with a leukemia diagnosis).
His feet and ankles are swollen from all the water they have to pump into him to keep the chemo flowing through his body. He is still in fine form, full of smiles and sassy comments. We are avoiding any talk of what life without an immune system might look like in a few days. And we're ready to sit down and watch a silly Italian movie that will transport us to Venice - a city he discovered this summer.
I also took his car down because I could no longer stand the pain of seeing his keys on the table in my living room even though he wasn't in my house.
When Tad is in my house, those three and a half days every two weeks that we call "shared custody of our couple" I see them looking up at me.
When he's there the fridge is full of good stuff I've gone out to buy at Trader Joe's with this incredibly maternal delight: I walk through the store literally asking myself over and over again, "what would he really like this time"?
When he's there I have a bouquet of cut flowers on the table in the living room right next to where he puts his laptop.
When he's there I am less of a busy-body, feel less the need to go out and be with people, to chat on the phone, to run around.
When he's there I read more. I breathe more slowly. I smile more.
I guess it's no surprise that I usually stop crying when I'm in that hospital room next to him. The fear that he might be dead in a few weeks dissipates. The tugging anxious feeling I get when I am out in the world goes away.
I spend entire days (and some nights) here not just because it takes a lot of work to put your life on hold for 5 weeks. Though I am here for that: for helping him with the paper work, the phone calls, the contacting family and friends, the finding someone to look after the cat. But I'm mostly here because I'm afraid that once they've blasted the hell out of his immune system with these chemicals that he just might not survive. Being in the same room with him - as much as possible - is my way of overcoming that fear.
Of course it makes no sense. I'm not going to get into a wrestling match with the grim reaper should he (or she) come by. If I give it more than a moment of thought I see that my being there doesn't keep death away even if I like to imagine that having a loved one close by somehow prolongs life through some kind of love-based immune stimulation.
No. My thinking is purely mathematical. If he is going to die I want to be with him as much as I can before he croaks. So if he is going to die soon a possibility our oncologist puts at 50% then I want to get as many minutes in now as possible. I am happy to spend more time away from him to balance this out in, say, ten years.
This is not a new feeling for me. Ever since the AIDS epidemic tore through my circle of friends like a weed whacker taking out the tall plants I have been far less patient. When I get stuck in traffic I sputter and spout because I feel like somehow someone is wasting MY time. The notion that hundreds of people are stuck in the same traffic jam and all just as unhappy means little to this part of my brain.
Life is short. I'm stuck. And I don't want to spend my precious hours this way. It is seriously near the top of my list of reasons why I don't do nine to fives.
We are getting ready for bed. Tad has just had his first shower in hospital since arriving here quite unexpectedly four days ago. (For the background info: he woke me up with pains that I figured were due to his strained work out the day before. He insisted the pain was more intense than work-out pains. I took him to ER where they said he had a mild version of pneumonia. I left for the day and said I'd meet him at my house that evening, only to find him still hospitalized and receiving a fresh batch of platelets - for some reason he had next to none. A whirlwind later - we landed in oncology with a leukemia diagnosis).
His feet and ankles are swollen from all the water they have to pump into him to keep the chemo flowing through his body. He is still in fine form, full of smiles and sassy comments. We are avoiding any talk of what life without an immune system might look like in a few days. And we're ready to sit down and watch a silly Italian movie that will transport us to Venice - a city he discovered this summer.
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